Re: Ongoing Edema/Swelling with Gleevec

[Guest guest]

Hi Lynn. You describe exact same problem I have. I was dxd in 1/03 and I kept

putting weight. To fight the weight gain, I end up eating one meal 500 cal a

day, still couldn't loose. Water pills lower my blood pressure to a critical

condition, which I had to stop taking my water pills. At one time I read that

Novartis are doing some research to find out if Gleevec is slowing our

metabolism and this may be the case. Some other CML patient has lost weight on

Gleevec. It may be our genetic which play a role with fat Gleevec. But I guess

to stay alive has a price. I am trying to exercise for my heart to stay healthy

if I am not tired. I am not sure if we can take any additives without side

effect such as diarrhea. I wish I had an answer.

T

Dxd 1/03

Zero club #764

-------------- Original message --------------

From: snickersunny <no_reply >

Hello fellow CML'ers,

Has anyone had experience with major swelling/edema and huge weight

gain while on Gleevec? I was dx'd 12/03 and this problem just keeps

getting worst and worst.

I have ruled out any possible secondary problems, and all of the tests

have come back normal. Thyroid, heart, kidney, diabetes, eating low

sodium, low fat, etc. My body has just ballooned and I'm extremely

frustrated.

I am PCRU and on 400 mg Gleevec. I also take 80 mg Lasix along with

Potassium, but I am not getting relief. I may go alot, when the lasix

kicks in, but it doesn't make a visual difference... and when I go to

bed and I get up the next day, I'm all swelled up again, and the

process continues.

When I was dx'd, I had a huge spleen and very high white count and I

wonder if I really screwed up my body and it's ability to release

fluids. I hardly urinate if I don't use diuretics. Could I have

Lymphedema caused by Gleevec?

I know my Hem/Onc is frustrated by it as well, but with Sprycel causing

more edema issues, and Plural Effusions, I would definately NOT be a

good candidate.

Does anyone know if the AMN107 causes edema? I get a great response

from Gleevec, but this problem is really getting difficult to live with

and be happy.

Does anyone do Accupuncture? Body wraps, and/or lymphatic massage?

These are some things I'm thinking about. Are there any safe herbal

additives that can be taken with Gleevec?

If there is anyone with CML that is experiencing this same problem or

has any suggestions, please feel free to share. I would sincerely

appreciate any input.

Sincerely,

Lynn from WA

[Guest guest]

Hi ,

Thank you so much for writing back.

I, too, try to exercise,(walking is about all I can do at this

point)... but I can only do it when my legs don't feel like lead and

I have the energy. Some days, the fatigue is just too much. I want

to keep my heart and circulatory system healthy and everything works

better when you move, but it's difficult to say the least.

Prior to diagnosis, I was once a long distance cyclist riding 300

miles per week and working full time. Now, I barely recognize my

prior self. After marrying, I took time off of work to start a

family and after my youngest was born, I got CML 3 years later. Now,

I can't work, and barely can finish a mile on my treadmill without

stopping and then restarting. It's quite pathetic! ;-)

Does anyone know if there will be serum level testing done on

Gleevec, on a widespread basis, for all cml patients to be tested in

the US? I feel like I need to be on a " low dose " Gleevec.. or Gleevec

Light (how's that sound?)... but am terrified that I will lose my

response if I start messing around with lowering the dose. I don't

want to mess up my response. Gleevec works great.. it's just seems

to be too much for me.

My friends/family would all rather see me fat and puffy than dead,

but this is definately not an easy road.

Lynn

400 mg Gleevec

>

> Hi Lynn. You describe exact same problem I have. I was dxd in 1/03

and I kept putting weight. To fight the weight gain, I end up eating

one meal 500 cal a day, still couldn't loose. Water pills lower my

blood pressure to a critical condition, which I had to stop taking my

water pills. At one time I read that Novartis are doing some research

to find out if Gleevec is slowing our metabolism and this may be the

case. Some other CML patient has lost weight on Gleevec. It may be

our genetic which play a role with fat Gleevec. But I guess to stay

alive has a price. I am trying to exercise for my heart to stay

healthy if I am not tired. I am not sure if we can take any additives

without side effect such as diarrhea. I wish I had an answer.

>

> T

> Dxd 1/03

> Zero club #764

> -------------- Original message --------------

> From: snickersunny <no_reply >

> Hello fellow CML'ers,

>

> Has anyone had experience with major swelling/edema and huge weight

> gain while on Gleevec? I was dx'd 12/03 and this problem just keeps

> getting worst and worst.

>

> I have ruled out any possible secondary problems, and all of the

tests

> have come back normal. Thyroid, heart, kidney, diabetes, eating low

> sodium, low fat, etc. My body has just ballooned and I'm extremely

> frustrated.

>

> I am PCRU and on 400 mg Gleevec. I also take 80 mg Lasix along with

> Potassium, but I am not getting relief. I may go alot, when the

lasix

> kicks in, but it doesn't make a visual difference... and when I go

to

> bed and I get up the next day, I'm all swelled up again, and the

> process continues.

>

> When I was dx'd, I had a huge spleen and very high white count and

I

> wonder if I really screwed up my body and it's ability to release

> fluids. I hardly urinate if I don't use diuretics. Could I have

> Lymphedema caused by Gleevec?

>

> I know my Hem/Onc is frustrated by it as well, but with Sprycel

causing

> more edema issues, and Plural Effusions, I would definately NOT be

a

> good candidate.

>

> Does anyone know if the AMN107 causes edema? I get a great response

> from Gleevec, but this problem is really getting difficult to live

with

> and be happy.

>

> Does anyone do Accupuncture? Body wraps, and/or lymphatic massage?

> These are some things I'm thinking about. Are there any safe herbal

> additives that can be taken with Gleevec?

>

> If there is anyone with CML that is experiencing this same problem

or

> has any suggestions, please feel free to share. I would sincerely

> appreciate any input.

>

> Sincerely,

>

> Lynn from WA

>

>

>

>

>

[Guest guest]

Hi Lynn,

I'm sorry to hear of your ongoing struggle with edema. The only

suggestion I would have is to maybe explore one of the other drug

options. Nilotinib isn't supposed to cause as much edema as Gleevec

and I expect that this drug will be approved in a few months.

There's also Bosutinib which according to Dr. Shah, the worst side

effects were dirreah and rash. Both drugs are supposed to be more

potent than Gleevec so I don't think you'd be compromising your CML

status by changing, but hopefully you would get some relief from the

edema.

I hope you find something to help soon,

Tracey

[Guest guest]

Hi Lynn. I have done some changes which seems to help with energy. I take my

200 mg with my cereal and breakfast in the morning and the other 200 mg late

with dinner, I felt that I had more energy in the afternoon for my exercise

during my lunch hour. I also found out that taking vitamin D with moderation

help with energy. As far for exercise I found water aerobic was fun to do and

easy on the joints. Try that. I would not mess with Gleevec dosage(400 mg min)

as long it works. Enjoy life and like you said being alive has a price and as

long our friends/family like us around the way we are that is a blessing. Take

care

T

400 mg

-------------- Original message ----------------------

From: snickersunny <no_reply >

>

> Hi ,

>

> Thank you so much for writing back.

>

> I, too, try to exercise,(walking is about all I can do at this

> point)... but I can only do it when my legs don't feel like lead and

> I have the energy. Some days, the fatigue is just too much. I want

> to keep my heart and circulatory system healthy and everything works

> better when you move, but it's difficult to say the least.

>

> Prior to diagnosis, I was once a long distance cyclist riding 300

> miles per week and working full time. Now, I barely recognize my

> prior self. After marrying, I took time off of work to start a

> family and after my youngest was born, I got CML 3 years later. Now,

> I can't work, and barely can finish a mile on my treadmill without

> stopping and then restarting. It's quite pathetic! ;-)

>

> Does anyone know if there will be serum level testing done on

> Gleevec, on a widespread basis, for all cml patients to be tested in

> the US? I feel like I need to be on a " low dose " Gleevec.. or Gleevec

> Light (how's that sound?)... but am terrified that I will lose my

> response if I start messing around with lowering the dose. I don't

> want to mess up my response. Gleevec works great.. it's just seems

> to be too much for me.

>

> My friends/family would all rather see me fat and puffy than dead,

> but this is definately not an easy road.

>

> Lynn

> 400 mg Gleevec

>

>

>

>

> >

> > Hi Lynn. You describe exact same problem I have. I was dxd in 1/03

> and I kept putting weight. To fight the weight gain, I end up eating

> one meal 500 cal a day, still couldn't loose. Water pills lower my

> blood pressure to a critical condition, which I had to stop taking my

> water pills. At one time I read that Novartis are doing some research

> to find out if Gleevec is slowing our metabolism and this may be the

> case. Some other CML patient has lost weight on Gleevec. It may be

> our genetic which play a role with fat Gleevec. But I guess to stay

> alive has a price. I am trying to exercise for my heart to stay

> healthy if I am not tired. I am not sure if we can take any additives

> without side effect such as diarrhea. I wish I had an answer.

> >

> > T

> > Dxd 1/03

> > Zero club #764

> > -------------- Original message --------------

> > From: snickersunny <no_reply >

> > Hello fellow CML'ers,

> >

> > Has anyone had experience with major swelling/edema and huge weight

> > gain while on Gleevec? I was dx'd 12/03 and this problem just keeps

> > getting worst and worst.

> >

> > I have ruled out any possible secondary problems, and all of the

> tests

> > have come back normal. Thyroid, heart, kidney, diabetes, eating low

> > sodium, low fat, etc. My body has just ballooned and I'm extremely

> > frustrated.

> >

> > I am PCRU and on 400 mg Gleevec. I also take 80 mg Lasix along with

> > Potassium, but I am not getting relief. I may go alot, when the

> lasix

> > kicks in, but it doesn't make a visual difference... and when I go

> to

> > bed and I get up the next day, I'm all swelled up again, and the

> > process continues.

> >

> > When I was dx'd, I had a huge spleen and very high white count and

> I

> > wonder if I really screwed up my body and it's ability to release

> > fluids. I hardly urinate if I don't use diuretics. Could I have

> > Lymphedema caused by Gleevec?

> >

> > I know my Hem/Onc is frustrated by it as well, but with Sprycel

> causing

> > more edema issues, and Plural Effusions, I would definately NOT be

> a

> > good candidate.

> >

> > Does anyone know if the AMN107 causes edema? I get a great response

> > from Gleevec, but this problem is really getting difficult to live

> with

> > and be happy.

> >

> > Does anyone do Accupuncture? Body wraps, and/or lymphatic massage?

> > These are some things I'm thinking about. Are there any safe herbal

> > additives that can be taken with Gleevec?

> >

> > If there is anyone with CML that is experiencing this same problem

> or

> > has any suggestions, please feel free to share. I would sincerely

> > appreciate any input.

> >

> > Sincerely,

> >

> > Lynn from WA

> >

> >

> >

> >

> >